20 year old female suffering from a lot of symptoms

Bones, joints and muscles
1

Hi all,

I don't really know where to start with this one. I've been experiencing a number of symptoms since October 2014 and am failing to find a good treatment or diagnosis! I am a 20 year old female in my final year of university and can safely say this final year has been ruined  [sad]  

So, I guess it first started in October with a flu-like illness (my GP hasn't confirmed whether it was flu or not) and since then I have not recovered. This illness lasted for approximately 3 weeks, then I felt better for about two weeks. After this two week period of feeling relatively better, extreme fatigue set in in November and December, along with these symptoms:

- muscle aches

- menstrual irregularities

- brain fog (my short-term memory is now horrific, can't concentrate or follow through with thoughts etc)

- dry skin

- dry eyes

- mild weight gain

I went to my GP and she suggested I have an underactive thyroid based on a strong family history, but this came back normal twice. She said to come back after the Christmas holidays if symptoms persisted.

In December the joint pain started. I first had shooting and burning pains in my knuckles accompanied with some redness but no warmth. Over December/January my MCP joints started to become very swollen intermittently and painful (still no warmth). My shoulders, elbows, wrists, knees and ankles can be added onto the joint pain list, however I have only experienced slight swelling in wrists and ankles. I also have morning stiffness for at least 2 hours, sometimes stretching into the afternoon. In January I also started to experience pain in my lower back, which is sometimes so bad it makes me cry in agony when standing or sitting. The pain in my joints/around my joints improves with movement and becomes worse with inactivity, however as most people will have experienced... really fatigued so want to rest but makes pain worse ahhhh  [cry]

In late January I got a referral from my GP to see a rheumatologist but the NHS waiting time was until June so I was fortunately able to go private. I first saw the rheumatologist in February. He did the normal physical examination, ordered blood tests, x-ray of chest and pelvis and a hand ultrasound.

Blood work has come back normal, as have x-rays and ultrasound. The rheumatologist says its a soft tissue rheumatism which should go away soon and was triggered by the virus I had last year. He said it could also possibly be the start of fibromyalgia syndrome. He gave me a Depo-Medrone injection in the bottom and said this would help to make me feel better... all its done is caused me grief. Over the past week since the injection I have had very bad muscular pain all over and other symptoms such as loss of appetite, increased stiffness, nausea, vomiting, diarrhea, dizziness (nearly embarrassingly fell over on the spot in a shop at the weekend), sore throat and worsened fatigue. Just very washed out at the moment. I have now found out this is a new viral illness I have just picked up so maybe it wasnt the injection...

The pain levels have only increased in my lower back and this pain is starting to move up my spine, with stabbing pain the ribs. Last night is the first night I have been woken up in pain - my lower back was searing, couldn't get comfortable and today my chest is all tight, and i can feel the pain travelling up my spine. I did some funny maneouvre on my leg earlier but immediately started crying as the pain shot up in my back. My legs and arms sometimes go numb very quickly. Prior to October 2014 I had the occasional hand tremor but I just didn't think much of it - I am wondering now if this is part of the problem. Should I ask for an MRI scan at my next appointment with the rheumy? I am wondering if something like ankylosing spondylitis or multiple sclerosis is another problem? I really hope it isn't as serious as that. Co-codamol and anti-inflammatories such as naproxen are not working for pain relief anymore. My GP has just started me on diclofenac so I am hoping this will work.

I am sorry for the massive essay! I just want my normal life back and I'm sure so many of you can sympathise with this. I've probably forgotten a lot of things here thanks to my lovely memory problems  [rolleyes]  If anyone could provide any insight I will really appreciate it. 

Thanks for reading 

2

oh and my ankles have been raging recently 

3

Sophie, something similar happened to me in September 2014. I had been absolutely fine. Very fit and active, working extremely hard etc. in fact I was just throwing myself back into work having spent 6 weeks in the USA on the west side. I woke up one morning with awful flu like symptoms and have not been the same since. I developed severe gas and bloating in my abdomen and went for a scan which only showed excess gas in my digestive tract. I went private as my NHS appointment is not until next week and i was referred in Nov. I too, had flu like symptoms which eventually spread to all my joints. Like you I have no warmth but ache considerably and crack, grind etc. something that my joints never did before. I have developed so many other symptoms too. Tinnitus. Memory lapses. Dry skin. Loss of taste etc etc. The private rheumatologist diagnosed Fibromylgia. It has changed my life completely from not bring able to work, drive etc. I hope you get to the bottom of whats going on with you soon. And yes you are more than entitled to request an MRI scan x

4

Hi Julie, thanks for your reply! 

I am sorry you are also suffering, its just horrific isn't it... one day your life is amazing and you're functioning perfectly, like you I was very fit you know going to the gym 5 times a week etc, and then the next day your life just changes forever! I wish I hadn't taken my normal life for granted  

Do you understand why this cracking and grinding of the joints happens when fibro is meant to be related to the nervous system? I can't get my head round it! 

What has your progression been like if you don't mind me asking? Do you think it will get better soon or do you feel your symptoms have only worsened? 

Sometimes I just feel ridiculous. I email my university support people almost every week telling them whats been wrong with me each week and how its affected my work... I sound like a massive hypochondriac but what can we do about it?! I'm so worried about what's going to happen after university, I want to work in London but I can't see that being realistic... and then my parents suggest I get a part time job in a shop instead while I'm recovering... but being on your feet all day isn't going to help either.

Fibromyalgia is the worst... nothing like feeling like a 100 year old when you're only young. The pain in my chest makes me feel like I'm dying 

5

Hi Sophie,

Sorry to hear of your troubles.

A lot of what you say could be FM but then again so could lots of others and you tend to end up with a diagnosis of FM when they rule out every thing else.

Re Naproxen/Diclofenic ( i have had both) they are the same family of drug but Diclofenic is out of favor due to some long term study's so it might be better to swap back. It might help using amitriptyline at night and a stronger pain med if you can get it prescribed like Tramadol.

It is also worth asking for a referal to the pain clinic at your local Hospital as they are much better at dealing with pain.

In the mean time adapt a pase yourselve regime as in try 15mins work 5 mins rest and then change the numbers to suit your body. Just for info when my pain is bad I end up on a 3mins of work 5 of rest. Hope you start to feel better soon

6

Hi,

Thank you for your advice.

I know, its an annoying set of symptoms to have because they tend to apply to a lot of illnesses! My rheumatologist told me a couple of weeks ago that he thinks this could go away as it might be a post-viral fatigue but at the rate this is progressing I really can't see this ending anytime soon or getting any better - I read on the letter he sent to my GP that he is considering fibromyalgia as a diagnosis if I haven't improved by the next time I see him.. which is in two weeks time. However, he hasn't done an MRI to check my back even though I have told him it is getting worse and worse.. I might insist with it just to be sure there isn't another problem as well as fibromyalgia.

OK - thanks for the advice about the pain meds, I will take that on board.

I will adopt that strategy this evening as I have to write 2000 words by tomorrow. 

Thank you very much for your help 

7

To be honest Sophie, i haven't really improved all that much. However there is a very slight improvement which is better than nothing. I work as a qualified nurse on a very busy ward and have not been able to work since all of this happened. Goodness knows whats going to happen as regards paying a mortgage etc. as will no longer be paid pretty soon. it is horrific and sometimes i wonder if the medical profession have missed something even though i have been assured that something would have shown in the bloods if that were the case. The joint problem is a mystery but I'm convinced this ' flu' thing that I got must have been some sort of virus that has resulted in this. I am currently taking codeine 60mgs three times a day. I take an anti depressant as I was tod this would help and I also have sleeping pills, as like you the pain started to wake me at night.  I have also tried reflexology, acupuncture, massage and have shares in Holland and Barratt :-) . I hope you start to feel a little better soon. I will let you know how I'm getting on. I'm also curious to know what the NHS rheumatolgist has to say next week!  I also feel like a hypochondriac as have so many symptoms but I've been told that this is part of Fibromylgia x 

8

I am so sorry to hear that, I really hope you can get something sorted - that extra stress isn't helpful for the illness at all. Its frustrating for working people like you because I guess its not really considered as a disability?Even though it clearly is a very disabling illness. Some people have got to see a massive wound appear on someone's body for people to believe they're ill! Please keep me posted on how you get on. I hope you can get it sorted.

Blood tests are actually pretty annoying... If they show nothing the doctor thinks you're perfectly fine in a lot of cases! I don't know about you but when I had the initial flu-like illness, people close to me didn't catch it... did you find that? And this illness was like full blown flu, honestly thought I was going to die and that's not exaggerating - the first week I lived in total darkness then the symptoms persisted further for a couple of weeks. So, to me, if this is common amongst many sufferers, it would suggest some other process is going on i.e. it isn't a virus causing the problem (as it isn't infectious) but a sudden hormonal change or something similar. However, what I also think may be a problem is the misdiagnosis of viral meningitis. I'm sure you know a lot more than me about that as you're a nurse but the symptoms of viral meningitis are often missed and my research tells me that this could be a major factor in triggering illnesses like M.E./Fibro. 

It is just very frustrating because people seem to think you can't surely have about 30 things wrong with you at once!! Yes, I am curious too what the NHS will say, let me know if you can!  good luck with everything x

9

I will Sophie. I have read the Fibromylgia Chart posted on this website which is quite helpful and it gives a list of symptoms too. It's worth having a look. And yes, I also thought I was going die in those first weeks. In fact I was preparing for the worst and went to write my will !! I have never felt ill like that in my whole life